How many second opinions? Or when to stop assessing preschooler if nothing seems to fit?

[Anonymous]

"Update: The invoice DH brought home tonight says ICD9 codes of #1 "CNS (Minor Neuromotor Abnormality)" and #2 "adjustment disorder." Under recommendations it says "Follow up, same clinic" and checked the box "other" and she wrote "pm" in the line next to it and then "as needed" under length of appointment. "

The ICD9 codes are for billing and usually reflect the purpose of the appointment, rather than the actual diagnosis.

Minor Neuromotor Abnormality is just the general billing code for anything like ADHD or ASD that is covered under medical (rather than mental health) insurance.

Adjustment disorder probably refers to the possible anxiety.

I am not sure about "pm" but it usually refers to parent management.

[Anonymous]

Anonymous wrote:
I feel your pain, OP. I was given three different diagnoses for my-then 5 year old, ranging from PDD-NOS to full blown autism to severe ADHD. I was told he would never be able to function in a mainstream school, he should be in a school for kids with severe autism, etc. Fast forward, he's now 14, his one and only diagnosis is ADHD/Inattentive, is enrolled in honors courses in his school, participates in Johns Hopkins CTY. And yes, I was told we would be lucky if he can spell or write his name.

What I am trying to say is that sometimes you need to go with your gut. What does your gut tell you are his biggest problems? Is it social speech? Is it his hyperactivity?

Amen, PP. Amen. OP, these boards are rife with stories like this of utter quacks whose "diagnoses" were not worth the paper on which they were written. YOU are the one and only expert on your child. If you feel what the doctors are telling you is off, do not for one moment doubt yourself. I did and I still have guilt about what my kid went through. And anger at the utterly incompetent "experts" who were more enamored of their own diplomas than anything else.

I find the evaluation process frustrating not because there are loads of incompetent doctors, but a single visit eval (and parent questionnaires) can only tell you so much. Kids have one and off days, and reat different in different settings. Our 3 year old was dx'd with severe ADHD after questionnaires and one office eval; 6 months later a second eval at school by the same doctor changed it to mild ADHD, but we discovered that there is probably some anxiety about lack of structure at home which is making behavior worse there ((more conflict). In a way, my gut told me that DS did not have sever (eg, inability to function in mainstream) setting ADHD, but after the first visit I was dishearened. Now I know we have something else to focus on. At this age, address the behavior first, and the dx may or may not follow.

[Anonymous]

Anonymous wrote:

Anonymous wrote:
I feel your pain, OP. I was given three different diagnoses for my-then 5 year old, ranging from PDD-NOS to full blown autism to severe ADHD. I was told he would never be able to function in a mainstream school, he should be in a school for kids with severe autism, etc. Fast forward, he's now 14, his one and only diagnosis is ADHD/Inattentive, is enrolled in honors courses in his school, participates in Johns Hopkins CTY. And yes, I was told we would be lucky if he can spell or write his name.

What I am trying to say is that sometimes you need to go with your gut. What does your gut tell you are his biggest problems? Is it social speech? Is it his hyperactivity?

Amen, PP. Amen. OP, these boards are rife with stories like this of utter quacks whose "diagnoses" were not worth the paper on which they were written. YOU are the one and only expert on your child. If you feel what the doctors are telling you is off, do not for one moment doubt yourself. I did and I still have guilt about what my kid went through. And anger at the utterly incompetent "experts" who were more enamored of their own diplomas than anything else.

I find the evaluation process frustrating not because there are loads of incompetent doctors, but a single visit eval (and parent questionnaires) can only tell you so much. Kids have one and off days, and reat different in different settings. Our 3 year old was dx'd with severe ADHD after questionnaires and one office eval; 6 months later a second eval at school by the same doctor changed it to mild ADHD, but we discovered that there is probably some anxiety about lack of structure at home which is making behavior worse there ((more conflict). In a way, my gut told me that DS did not have sever (eg, inability to function in mainstream) setting ADHD, but after the first visit I was dishearened. Now I know we have something else to focus on. At this age, address the behavior first, and the dx may or may not follow.

The bolded above is precisely why any "expert" who tries to DX a very young child is a quack from whom you should run, fast and far. Our dev. ped at GU basically said as much. She told us upfront that unless there were obvious, physical signs of neurological abnormality, that she could only give us things to consider and watch out for, and that at best she could make recommendations for an optimal school/childcare setting. She made it clear that working through issues with very young children is a process and one of trial and error. We loved her for that. Even though it didn't give us some definitive answer, and maybe precisely because of that. Because those who did try to give us a DX were so off base it was laughable.

[Anonymous]

OP here, thanks to all who have continued to weigh in. Thanks especially 9:53 for helping to decipher the billing codes.

I've followed-up with Shapiro -- they won't open to new patients until April, so I've asked if they'll put me on the waiting list that they will start working down in spring, and asked if they'll consider seeing her past her 4th birthday. If they say no, that's out.

Meanwhile, we've got appointments at NIH in January. At least those are 4 hours interviewing the parents and 4 hours of testing. But point taken about the bad days. In our case, the assessors seem to catch DD on a good day and then wonder why we think there's a problem.

I do understand that this is a process, rather than an event. I'd be ok with letting things go if we weren't continuing to have disruptive behaviors. So we'll keep treating the behaviors and symptoms with behavior modifications (consistent, positive reinforcement charts) at home and school, and try group therapy for the anxiety. I do trust my gut, but my gut isn't sure. This could just be her strong will and temperment that we have to address the best we can. I just know from seeing her around other kids that her behavior and reactions are more extreme than other girls her age.

And beyond that, we'll just have to wait for her to get older and see how things develop. Maybe we'll get to see Shapiro in 6-12 months, before she turns 5, and things will be more obvious then. If no diagnosis follows, so be it. At least we'll have done the best we can to help bring the right, supportive environment to her life and ours.

[Anonymous]

OP here. Just wanted to thank the poster from 12/23/2013 19:41. DD was diagnosed with obstructive sleep apnea, and we'll be having a tonsil and adenoidectomy in August.

Also, we got into PEP Collaborative in MoCo, and were able to get a spot with Dr. Shapiro. So we have high hopes for some progress next year.

[Anonymous]

OP, it sounds like you are doing the right things and it's so frustrating. FYIKKI is VERY conservative about giving an autism diagnosis and I think kids with HFA and Aspergers would be more likely to get a dx of ADHD and anxiety-at least from our experience and many people we have spoken to. I personally would find a developmental pediatrician closer because at some point you may want the developmental ped to observe your child in the school setting.

You are right, it is early to get a permanent dx. I would focus on interventions, and maybe see a new developmental pediatrician in 6 months. I would also keep getting re-evals through the school system as often as allowed because it is best to have an IEP in place when entering K.

[Anonymous]

Just read your response after posting. Ignore what I wrote. Sounds great OP! You are set.

[Anonymous]

OP thanks for updating. I'm posted on 12/23 at 15:57 and 16:21. We got into PEP Collab in Feb. I can't tell you how awesome it has been. My son is growing by leaps and bounds. I'll be honest and say the first week was tricky and the teachers were considering moving him to the Classic class. But I'm glad MCPS asks teachers and parents to wait 30 days before moving to a different class. It's been a great environment for my son.

His mainstream preschool says that they have seen incredible growth in my son. What he's learning in PEP he is able to translate into his other preschool. I'm so happy to hear that your DD will be Collab. It's really a great program.

Also, we are patients of Dr. Shapiro and DH and I took his class. You were right in your thinking that it's a good class to meet other parents with children with similar issues. I came out of the class with a number of strategies and a few phone numbers. It really helps to be able to bounce ideas and information off of friends in person. If you didn't take his winter class, I encourage you to take it in the summer or the fall. It's really good.

[Anonymous]

20:02 and 20:03: You're right, KKI (and others) said no autism, maybe ADHD (but too soon to know) and definitely "other anxiety."

20:24: Yes, we may take his class in the fall, but it is really tough for us to make a weekly commitment to be anywhere on weeknights. Glad to hear you are having a good experience with PEP Collaboration. We are heading to Montgomery Knolls, and feel very lucky to have Mimi's class, after reading recommendations on this board.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Shapiro takes new patients who are 4 yrs old and younger so you have a lot of time to get him. GL!

No, she doesn't. Her DD will be four in March. That's in three months. Having BTDT, she will never get in with Shapiro. Not trying to be discouraging, it's just a fact.

Dr. Shapiro is our developmental ped and he takes new patients who are 4 yrs old and younger. DS became Shapiro's patient when he was four yrs old.

Yes, I get that. Point is when I called to try and get in with him, and was told they were not taking new patients, they told me it would be a six month wait. OP can try, but with three months to go until her DD turns 4, her chances aren't great. All of Washington tries to get in with him
. The man only has so many hours in a day.

4 years old and younger means that they have until her DD's 5th birthday, which is 15 months away.

[Anonymous]

Anonymous wrote:20:02 and 20:03: You're right, KKI (and others) said no autism, maybe ADHD (but too soon to know) and definitely "other anxiety."

20:24: Yes, we may take his class in the fall, but it is really tough for us to make a weekly commitment to be anywhere on weeknights. Glad to hear you are having a good experience with PEP Collaboration. We are heading to Montgomery Knolls, and feel very lucky to have Mimi's class, after reading recommendations on this board.

We felt the same way but we also found that our sons issues were putting a strain on our marriage. So we double dipped...we hired a standing sitter and went to dinner after class. It became our date night. Sometimes we talked about class and our son and other nights we just hung out together. It was good bonding time for our marriage.

[Anonymous]

OP - we took our son to a psychologist around this age for extreme tantrums (like, over the top, cannot exaggerate how bad it was). He had very willful behavior in preschool (I got notes several times per week), but no tantrums at school.

DS is seven now- the tantrums are almost completely gone- just occasional , and not nearly so horrific. However, what stuck was moderate anxiety, perfectionism/controlling nature, and emotional intensity.

We saw adjustment disorder from his psychologist too- it was placeholder to see if he "grew out" of some behaviors. His outbursts peaked around age 4 1/2 and gradually declined through 5 3/4. So, he was nearly six before things got appreciably better.